Jane Kaye
Director of the Centre for Law, Health and Emerging Technologies at Oxford: HeLEX
Other affiliations
St Cross CollegeBiography
Prof. Jane Kaye DPhil, LLB, Grad Dip Leg, BA is the Director of the Centre for Law, Health and Emerging Technologies (HeLEX) in the Faculty of Law at the University of Oxford and also leads a research team with Associate Professor Mark Taylor, at the Centre for Health, Law and Emerging Technologies at Melbourne Law School, University of Melbourne, Australia. Her teams consist of lawyers and sociologists who use mixed-method empirical approaches combined with legal analysis to explore the relationships between law, governance and best practice in the area of health. She obtained her degrees from the Australian National University (BA); University of Melbourne (LLB); and University of Oxford (DPhil). She was admitted to practice as a solicitor/barrister in 1997. Within the Oxford Faculty of Law she co-leads the Health, Law and Technology Research Group with Professor Justine Pila and also holds Associate Professorships at the Faculty of Law, University of Tasmania and at the Bioethics Centre, led by Professor Kazuto Kato at the Osaka Medical School, Japan.
Professor Kaye is on a number of international expert committees and scientific advisory boards and has been on the Nuffield Council Bioethics Working Group on Biodata and Rapporteur for the EC Expert Report, Biobanks for Europe - A Challenge for Governance, June 2012. Most recently she was on the UN Taskforce on Health Data Privacy, appointed to the Scientific Advisory Board of the European biobanking platform BBMRI-ERIC, and is on the WP8 Advisory Group of the Joint European Action TEHDAS ‘Towards a European Health Data Space’. She is also on the editorial boards of Genomic Medicine, Law, Innovation and Technology, the Journal of Law, Information and Science, New Genetics & Society and Life Sciences, Society and Policy. The main focus of her research is on digital innovation with an emphasis on digital privacy and dynamic consent, public involvement and engagement in research, biobanks, genomics, data-sharing frameworks, global governance and translational research. She is very interested in supervising students who would like to focus on these areas or any other area of innovation in health.
Featured Publications
Publications
Allesøe R, Lundgaard A, Hernández Medina R, Aguayo-Orozco A, Johansen J, Nissen J, Brorsson C, Mazzoni G, Niu L, Biel J, Brasas V, Webel H, Benros M, Pedersen A, Chmura P, Jacobsen U, Mari A, Koivula R, Mahajan A, Vinuela A, Tajes J, Sharma S, Haid M, Hong M-G, Musholt P, De Masi F, Vogt J, Pedersen H, Gudmundsdottir V, Jones A, Kennedy G, Bell J, Thomas E, Frost G, Thomsen H, Hansen E, Hansen T, Vestergaard H, Muilwijk M, Blom M, ’t Hart L, Pattou F, Raverdy V, Brage S, Kokkola T, Heggie A, McEvoy D, Mourby M, Kaye J, Hattersley A, McDonald T, Ridderstråle M, Walker M, Forgie I, Giordano G, Pavo I, Ruetten H, Pedersen O, Hansen T, Dermitzakis E, Franks P, Schwenk J, Adamski J, McCarthy M, Pearson E, Banasik K, Rasmussen S, Brunak S and IMI DIRECT Consortium, “Discovery of Drug-Omics Associations in Type 2 Diabetes With Generative Deep-Learning Models”. [2023] Nature biotechnology
Bicudo E, Morrison M, Li P, Faulkner A, Webster A, Mourby M and Kaye J, “Patent Power in Biomedical Innovation: Technology Governance in Biomodifying Technologies” (2022) 25 Journal of World Intellectual Property 473
Mourby M, Bell J, Morrison M, Faulkner A, Li P, Bicudo E, Webster A and Kaye J, “Biomodifying the ‘natural’: From Adaptive Regulation to Adaptive Societal Governance” (2022) 9 Journal of Law and the Biosciences
Bin Abdul Aziz M, Morrison M and Kaye J, “Creative Regulatory Practices to Develop Stem-Cell Technology: The Way Forward for Malaysia”. (2022) 17 Regenerative medicine 91
Rothstein M, Zawati M, Thorogood A, Beauvais M, Joly Y, Brothers K, Lang M, Andanda P, Ho C, Isasi R, Kaye J, Lee W, Nnamuchi O, Saltzman A and Knoppers B, “Streamlining Ethics Review for International Health Research”. (2022) 375 Science (New York, N.Y.) 825
Shah N, Viberg Johansson J, Haraldsdóttir E, Bentzen H, Coy S, Mascalzoni D, Jónsdóttir G and Kaye J, “Governing Health Data across Changing Contexts: A Focus Group Study of citizen’s Views in England, Iceland, and Sweden” (2021) 156 International Journal of Medical Informatics
Lu J, Vogrin S, McAuley S, Lee M, Paldus B, Bach L, Burt M, Clarke P, Cohen N, Colman P, de Bock M, Jane Holmes-Walker D, Jenkins A, Kaye J, Keech A, Kumareswaran K, MacIsaac R, McCallum R, Roem K, Sims C, Stranks S, Trawley S, Ward G, Sundararajan V, Jones T and O’Neal D, “Meal-Time Glycaemia in Adults With Type 1 Diabetes Using Multiple Daily Injections Vs Insulin Pump Therapy Following Carbohydrate-Counting Education and Bolus Calculator Provision” (2021) 179 Diabetes Research and Clinical Practice
Viberg Johansson J, Bentzen H, Shah N, Haraldsdóttir E, Jónsdóttir G, Kaye J, Mascalzoni D and Veldwijk J, “Preferences of the Public for Sharing Health Data: Discrete Choice Experiment” (2021) 9 JMIR Medical Informatics
Viberg Johansson J, Shah N, Haraldsdóttir E, Bentzen H, Coy S, Kaye J, Mascalzoni D and Veldwijk J, “Governance Mechanisms for Sharing of Health Data: An Approach towards Selecting Attributes for Complex Discrete Choice Experiment Studies” (2021) 66 Technology in Society
Haas M, Teare H, Prictor M, Ceregra G, Vidgen M, Bunker D, Kaye J and Boughtwood T, “’CTRL’: An Online, Dynamic Consent and Participant Engagement Platform Working towards Solving the Complexities of Consent in Genomic Research”. (2021) 29 European journal of human genetics : EJHG 687
Teare H, Prictor M and Kaye J, “Reflections on Dynamic Consent in Biomedical Research: The Story so Far”. (2021) 29 European journal of human genetics : EJHG 649
Bizzotto R, Jennison C, Jones A, Kurbasic A, Tura A, Kennedy G, Bell J, Thomas E, Frost G, Eriksen R, Koivula R, Brage S, Kaye J, Hattersley A, Heggie A, McEvoy D, ’t Hart L, Beulens J, Elders P, Musholt P, Ridderstråle M, Hansen T, Allin K, Hansen T, Vestergaard H, Lundgaard A, Thomsen H, De Masi F, Tsirigos K, Brunak S, Viñuela A, Mahajan A, McDonald T, Kokkola T, Forgie I, Giordano G, Pavo I, Ruetten H, Dermitzakis E, McCarthy M, Pedersen O, Schwenk J, Adamski J, Franks P, Walker M, Pearson E, Mari A and IMI DIRECT consortium, “Processes Underlying Glycemic Deterioration in Type 2 Diabetes: An IMI DIRECT Study”. (2021) 44 Diabetes care 511
Hamakawa N, Kogetsu A, Isono M, Yamasaki C, Manabe S, Takeda T, Iwamoto K, Kubota T, Barrett J, Gray N, Turner A, Teare H, Imamura Y, Yamamoto B, Kaye J, Hide M, Takahashi M, Matsumura Y, Javaid M and Kato K, “The Practice of Active Patient Involvement in Rare Disease Research Using ICT: Experiences and Lessons from the RUDY JAPAN Project”. (2021) 7 Research involvement and engagement 9
O’Doherty K, Shabani M, Dove E, Bentzen H, Borry P, Burgess M, Chalmers D, De Vries J, Eckstein L, Fullerton S, Juengst E, Kato K, Kaye J, Knoppers B, Koenig B, Manson S, McGrail K, McGuire A, Meslin E, Nicol D, Prainsack B, Terry S, Thorogood A and Burke W, “Toward Better Governance of Human Genomic Data”. (2021) 53 Nature genetics 2
Prictor M, Taylor M, Kaye J, Emery J, Nelson C and Manski-Nankervis J-A, “Clinical Decision Support Systems and Medico-Legal Liability in Recall and Treatment: A Fresh Examination”. (2020) 28 Journal of law and medicine 132
Nicol D, Joly Y, Kaye J, Knoppers B, Meslin E, Nielsen J, Otlowski M and Warner K, “Don Chalmers: His Contributions to Legal Research and Education, Health Law, and Research Ethics, Locally and Globally”. (2020) 28 Journal of law and medicine 289
Morrison M, Mourby M, Gowans H, Coy S and Kaye J, “Governance of Research Consortia: Challenges of Implementing Responsible Research and Innovation Within Europe” (2020) 16 Life Sciences, Society and Policy
Hamakawa N, Nakano R, Kogetsu A, Coathup V, Kaye J, Yamamoto B and Kato K, “Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan: Scoping Review” (2020) 22 Journal of Medical Internet Research
Prictor M, Lewis M, Newson A, Haas M, Baba S, Kim H, Kokado M, Minari J, Molnár-Gábor F, Yamamoto B, Kaye J and Teare H, “Dynamic Consent: An Evaluation and Reporting Framework”. (2020) 15 Journal of empirical research on human research ethics : JERHRE 175
Retzer A, Kaye J and Gray R, “Erratum: A Factorial Survey Investigating the Effect of Disclosing Parental Intellectual Disability on Risk Assessments by children’s Social Workers in Child Safeguarding Scenarios (British Journal of Social Work (2020) 50 (1185-1200) DOI: 10.1093 Bjsw Bcz076)” (2020) 50 British Journal of Social Work 1295
Prictor M, Huebner S, Teare H, Burchill L and Kaye J, “Australian Aboriginal and Torres Strait Islander Collections of Genetic Heritage: The Legal, Ethical and Practical Considerations of a Dynamic Consent Approach to Decision Making”. (2020) 48 The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 205
de Neiva Borba M, Joly Y, Rial-Sebbag E and KAYE J, “Direct to Participant Participation Country Reports: The United Kingdom” [2020] Journal of Law, Medicine and Ethics
Kunkle B, Grenier-Boley B, Sims R, Bis J, Damotte V, Naj A, Boland A, Vronskaya M, van der Lee S, Amlie-Wolf A, Bellenguez C, Frizatti A, Chouraki V, Martin E, Sleegers K, Badarinarayan N, Jakobsdottir J, Hamilton-Nelson K, Moreno-Grau S, Olaso R, Raybould R, Chen Y, Kuzma A, Hiltunen M, Morgan T, Ahmad S, Vardarajan B, Epelbaum J, Hoffmann P, Boada M, Beecham G, Garnier J-G, Harold D, Fitzpatrick A, Valladares O, Moutet M-L, Gerrish A, Smith A, Qu L, Bacq D, Denning N, Jian X, Zhao Y, Del Zompo M, Fox N, Choi S-H, Mateo I, Hughes J, Adams H, Malamon J, Sanchez-Garcia F, Patel Y, Brody J, Dombroski B, Naranjo M, Daniilidou M, Eiriksdottir G, Mukherjee S, Wallon D, Uphill J, Aspelund T, Cantwell L, Garzia F, Galimberti D, Hofer E, Butkiewicz M, Fin B, Scarpini E, Sarnowski C, Bush W, Meslage S, Kornhuber J, White C, Song Y, Barber R, Engelborghs S, Sordon S, Voijnovic D, Adams P, Vandenberghe R, Mayhaus M, Cupples L, Albert M, De Deyn P, Gu W, Himali J, Beekly D, Squassina A, Hartmann A, Orellana A, Blacker D, Rodriguez-Rodriguez E, Lovestone S, Garcia M, Doody R, Munoz-Fernadez C, Sussams R, Lin H, Fairchild T, Benito Y, Holmes C, Karamujić-Čomić H, Frosch M, Thonberg H, Maier W, Roshchupkin G, Ghetti B, Giedraitis V, Kawalia A, Li S, Huebinger R, Kilander L, Moebus S, Hernández I, Kamboh M, Brundin R, Turton J, Yang Q, Katz M, Concari L, Lord J, Beiser A, Keene C, Helisalmi S, Kloszewska I, Kukull W, Koivisto A, Lynch A, Tarraga L, Larson E, Haapasalo A, Lawlor B, Mosley T, Lipton R, Solfrizzi V, Gill M, Longstreth W, Montine T, Frisardi V, Diez-Fairen M, Rivadeneira F, Petersen R, Deramecourt V, Alvarez I, Salani F, Ciaramella A, Boerwinkle E, Reiman E, Fievet N, Rotter J, Reisch J, Hanon O, Cupidi C, Uitterlinden A, Royall D, Dufouil C, Maletta R, de Rojas I, Sano M, Brice A, Cecchetti R, George-Hyslop P, Ritchie K, Tsolaki M, Tsuang D, Dubois B, Craig D, Wu C-K, Soininen H, Avramidou D, Albin R, Fratiglioni L, Germanou A, Apostolova L, Keller L, Koutroumani M, Arnold S, Panza F, Gkatzima O, Asthana S, Hannequin D, Whitehead P, Atwood C, Caffarra P, Hampel H, Quintela I, Carracedo Á, Lannfelt L, Rubinsztein D, Barnes L, Pasquier F, Frölich L, Barral S, McGuinness B, Beach T, Johnston J, Becker J, Passmore P, Bigio E, Schott J, Bird T, Warren J, Boeve B, Lupton M, Bowen J, Proitsi P, Boxer A, Powell J, Burke J, Kauwe J, Burns J, Mancuso M, Buxbaum J, Bonuccelli U, Cairns N, McQuillin A, Cao C, Livingston G, Carlson C, Bass N, Carlsson C, Hardy J, Carney R, Bras J, Carrasquillo M, Guerreiro R, Allen M, Chui H, Fisher E, Masullo C, Crocco E, DeCarli C, Bisceglio G, Dick M, Ma L, Duara R, Graff-Radford N, Evans D, Hodges A, Faber K, Scherer M, Fallon K, Riemenschneider M, Fardo D, Heun R, Farlow M, Kölsch H, Ferris S, Leber M, Foroud T, Heuser I, Galasko D, Giegling I, Gearing M, Hüll M, Geschwind D, Gilbert J, Morris J, Green R, Mayo K, Growdon J, Feulner T, Hamilton R, Harrell L, Drichel D, Honig L, Cushion T, Huentelman M, Hollingworth P, Hulette C, Hyman B, Marshall R, Jarvik G, Meggy A, Abner E, Menzies G, Jin L-W, Leonenko G, Real L, Jun G, Baldwin C, Grozeva D, Karydas A, Russo G, Kaye J, Kim R, Jessen F, Kowall N, Vellas B, Kramer J, Vardy E, LaFerla F, Jöckel K-H, Lah J, Dichgans M, Leverenz J, Mann D, Levey A, Pickering-Brown S, Lieberman A, Klopp N, Lunetta K, Wichmann H-E, Lyketsos C, Morgan K, Marson D, Brown K, Martiniuk F, Medway C, Mash D, Nöthen M, Masliah E, Hooper N, McCormick W, Daniele A, McCurry S, Bayer A, McDavid A, Gallacher J, McKee A, van den Bussche H, Mesulam M, Brayne C, Miller B, Riedel-Heller S, Miller C, Miller J, Al-Chalabi A, Morris J, Shaw C, Myers A, Wiltfang J, O’Bryant S, Olichney J, Alvarez V, Parisi J, Singleton A, Paulson H, Collinge J, Perry W, Mead S, Peskind E, Cribbs D, Rossor M, Pierce A, Ryan N, Poon W, Nacmias B, Potter H, Sorbi S, Quinn J, Sacchinelli E, Raj A, Spalletta G, Raskind M, Caltagirone C, Bossù P, Orfei M, Reisberg B, Clarke R, Reitz C, Smith A, Ringman J, Warden D, Roberson E, Wilcock G, Rogaeva E, Bruni A, Rosen H, Gallo M, Rosenberg R, Ben-Shlomo Y, Sager M, Mecocci P, Saykin A, Pastor P, Cuccaro M, Vance J, Schneider J, Schneider L, Slifer S, Seeley W, Smith A, Sonnen J, Spina S, Stern R, Swerdlow R, Tang M, Tanzi R, Trojanowski J, Troncoso J, Van Deerlin V, Van Eldik L, Vinters H, Vonsattel J, Weintraub S, Welsh-Bohmer K, Wilhelmsen K, Williamson J, Wingo T, Woltjer R, Wright C, Yu C-E, Yu L, Saba Y, Alzheimer Disease Genetics Consortium (ADGC), European Alzheimer’s Disease Initiative (EADI), Cohorts for Heart and Aging Research in Genomic Epidemiology Consortium (CHARGE), Genetic and Environmental Risk in AD/Defining Genetic, Polygenic and Environmental Risk for Alzheimer’s Disease Consortium (GERAD/PERADES), Pilotto A, Bullido M, Peters O, Crane P, Bennett D, Bosco P, Coto E, Boccardi V, De Jager P, Lleo A, Warner N, Lopez O, Ingelsson M, Deloukas P, Cruchaga C, Graff C, Gwilliam R, Fornage M, Goate A, Sanchez-Juan P, Kehoe P, Amin N, Ertekin-Taner N, Berr C, Debette S, Love S, Launer L, Younkin S, Dartigues J-F, Corcoran C, Ikram M, Dickson D, Nicolas G, Campion D, Tschanz J, Schmidt H, Hakonarson H, Clarimon J, Munger R, Schmidt R, Farrer L, Van Broeckhoven C, O’Donovan M, DeStefano A, Jones L, Haines J, Deleuze J-F, Owen M, Gudnason V, Mayeux R, Escott-Price V, Psaty B, Ramirez A, Wang L-S, Ruiz A, van Duijn C, Holmans P, Seshadri S, Williams J, Amouyel P, Schellenberg G, Lambert J-C and Pericak-Vance M, “Author Correction: Genetic Meta-Analysis of Diagnosed Alzheimer’s Disease Identifies New Risk Loci and Implicates Aβ, Tau, Immunity and Lipid Processing”. (2019) 51 Nature genetics 1423
Mourby M, Aidinlis S, Gowans H, Smith H and Kaye J, “Governance of Academic Research Data under the GDPR—lessons from the UK” (2019) 9 International Data Privacy Law 192
Retzer A, Kaye J and Gray R, “A Factorial Survey Investigating the Effect of Disclosing Parental Intellectual Disability on Risk Assessments by children’s Social Workers in Child Safeguarding Scenarios” (2019) 50 British Journal of Social Work 1185
Nicol D, Eckstein L, Bentzen H, Borry P, Burgess M, Burke W, Chalmers D, Cho M, Dove E, Fullerton S, Ida R, Kato K, Kaye J, Koenig B, Manson S, McGrail K, Meslin E, O’Doherty K, Prainsack B, Shabani M, Tabor H, Thorogood A and De Vries J, “Consent Insufficient for Data Release” (2019) 364 Science 445
Mourby M, Doidge J, Jones K, Aidinlis S, Smith H, Bell J, Gilbert R, Dutey-Magni P and Kaye J, “Health Data Linkage for Public Interest Research in the UK: Key Obstacles and Solutions” (2019) 4 International Journal of Population Data Science 1
Bell J, Aidinlis S, Smith H, Mourby M, Gowans H, E Wallace S and Kaye J, “Balancing Data subjects’ Rights and Public Interest Research: Examining the Interplay Between UK Law, EU Human Rights Law and the GDPR” (2019) 5 European Data Protection Law Review 43
Mascalzoni D, Bentzen H, Budin-Ljøsne I, Bygrave L, Bell J, Dove E, Fuchsberger C, Hveem K, Mayrhofer M, Meraviglia V, Pattaro C, Pramstaller P, Rakic V, Rossini A, Shabani M, Svantesson D, Tomasi M, Ursin L, Wjst M and Kaye J, “Are Requirements to Deposit Data in Research Repositories Compatible With the European Union’s General Data Protection Regulation?” [2019] Annals of internal medicine
Shah N, Coathup V, Teare H, Forgie I, Giordano G, Hansen T, Groeneveld L, Hudson M, Pearson E, Ruetten H and Kaye J, “Motivations for Data sharing—views of Research Participants from Four European Countries: A DIRECT Study” (2019) 27 European Journal of Human Genetics 721
Bell J, Wallace S, Mourby M, Gowans H, Aidinlis S, Smith H and Kaye J, “Lawful Disclosure of Administrative Data for Research Purposes in the UK” (2019) 2 Journal of Data Protection and Privacy 264
Kaye J, “Personal Genome Project UK (PGP-UK): A Research and Citizen Science Hybrid Project in Support of Personalized Medicine” (2018) 11 BMC Medical Genomics
Shah N, Coathup V, Teare H, Forgie I, Giordano G, Hansen T, Groeneveld L, Hudson M, Pearson E, Ruetten H and Kaye J, “Sharing Data for Future Research-Engaging participants’ Views about Data Governance Beyond the Original Project: A DIRECT Study” (2018) 21 Genetics in Medicine 1131
Prictor M, Teare H and Kaye J, “Equitable Participation in Biobanks: The Risks and Benefits of a ‘Dynamic Consent’ Approach” (2018) 6 Frontiers in Public Health
Teare H, De Masi F, Banasik K, Barnett A, Herrgard S, Jablonka B, Postma J, McDonald T, Forgie I, Chmura P, Rydzka E, Gupta R, Brunak S, Pearson E and Kaye J, “The Governance Structure for Data Access in the DIRECT Consortium: An Innovative Medicines Initiative (IMI) Project” (2018) 14 Life Sciences, Society and Policy 20
Kaye J, Terry S, Juengst E, Coy S, Chalmers D, Dove E, Budin-Ljøsne I, Adebamowo C, Ogbe E, Bezuidenhout L, Morrison M, Minion J, Murtagh M, Minari J, Teare H, Isasi R, Kato K, Rial-Sebbag E, Marshall P, Koenig B and Cambon-Thomsen A, “Including All Voices in International Data-Sharing Governance”. (2018) 12 Human Genomics 13
Myhre S, Ghanem B, Salman R, Kaye J and Frøen J, “Governance Guidance for an ERegistry for Maternal and Child Health: Lessons from the Occupied Palestinian Territory” (2018) 391 Lancet S35
Mourby M, Mackey E, Elliot M, Gowans H, Wallace S, Bell J, Smith H, Aidinlis S and Kaye J, “Are ‘pseudonymised’ Data Always Personal Data? Implications of the GDPR for Administrative Data Research in the UK” (2018) 34 Computer Law and Security Review 222
Parra-Calderón C, Kaye J, Moreno-Conde A, Teare H and Nuñez-Benjumea F, “Desiderata for Digital Consent in Genomic Research”. (2018) 9 Journal of Community Genetics 191
Coathup V, Finlay T, Teare H, Kaye J, South M, Watt F and Luqmani R, “Using an Electronic Device in the Waiting Room for Patient Engagement With a Musculoskeletal Patient Registry: A Mixed Methods Study” (2018) 4 Digital Health 1
Bin Abdul Aziz M, Morrison M and Kaye J, “Regulating Human Stem Cell Research and Therapy in Low- and Middle-Income Countries: Malaysian Perspectives” (2017) 37 New Genetics and Society 2
Coathup V, Hamakawa N, Finlay T, Bell J, Kaye J and Kato K, “Participant-Centric Initiatives and Medical Research: Scoping Review Protocol”. (2017) 6 JMIR Research Protocols e245
Morrison M, Bell J, George C, Harmon S, Munsie M and Kaye J, “The European General Data Protection Regulation: Challenges and Considerations for IPSC Researchers and Biobanks” (2017) 12 Regenerative Medicine 693
Mitchell C, Ploem C, Chico V, Ormondroyd E, Hall A, Wallace S, Fay M, Goodwin D, Bell J, Phillips S, Taylor J, Hennekam R and Kaye J, “Exploring the Potential Duty of Care in Clinical Genomics under UK Law”. (2017) 17 Medical Law International 158
Sipp D, Caulfield T, Kaye J, Barfoot J, Blackburn C, Chan S, De Luca M, Kent A, McCabe C, Munsie M, Sleeboom-Faulkner M, Sugarman J, van Zimmeren E, Zarzeczny A and Rasko J, “Marketing of Unproven Stem cell–based Interventions: A Call to Action” (2017) 9 Science Translational Medicine
Teare H, Hogg J, Kaye J, Luqmani R, Rush E, Turner A, Watts L, Williams M and Javaid M, “The RUDY Study: Using Digital Technologies to Enable a Research Partnership” (2017) 25 European Journal of Human Genetics 816
De Clercq E, Kaye J, Wolf S, Koenig B and Elger B, “Returning Results in Biobank Research: Global Trends and Solutions”. (2017) 21 Genetic Testing and Molecular Biomarkers 128
Budin-Ljøsne I, Teare H, Kaye J, Beck S, Bentzen H, Caenazzo L, Collett C, D’Abramo F, Felzmann H, Finlay T, Javaid M, Jones E, Katić V, Simpson A and Mascalzoni D, “Dynamic Consent: A Potential Solution to Some of the Challenges of Modern Biomedical Research” (2017) 18 BMC Medical Ethics 4
Forestier-Zhang L, Watts L, Turner A, Teare H, Kaye J, Barrett J, Cooper C, Eastell R, Wordsworth P, Javaid M and Pinedo-Villanueva R, “Health-Related Quality of Life and a Cost-Utility Simulation of Adults in the UK With Osteogenesis Imperfecta, X-Linked Hypophosphatemia and Fibrous Dysplasia” (2016) 11 Orphanet Journal of Rare Diseases
Javaid M, Forestier-Zhank L, Watts L, Turner A, Ponte C, Teare H, Gray D, Gray N, Popert R, Hogg J, Barrett J, Pinedo-Villanueva R, Cooper C, Eastell R, Bishop N, Luqmani R, Wordsworth B and Kaye J, “The RUDY Study Platform – a Novel Approach to Patient Driven Research in Rare Musculoskeletal Diseases” (2016) 11 Orphanet Journal of Rare Diseases 150
Giesbertz N, Melham K, Kaye J, van Delden J and Bredenoord A, “Personalized Assent for Pediatric Biobanks” (2016) 17 BMC Medical Ethics
Myhre S, Kaye J, Bygrave L, Aanestad M, Ghanem B, Mechael P and Frøen J, “ERegistries: Governance for Electronic Maternal and Child Health Registries”. (2016) 16 BMC Pregnancy and Childbirth 279
Coathup V, Teare H, Minari J, Yoshizawa G, Kaye J, Takahashi M and Kato K, “Using Digital Technologies to Engage With Medical Research: Views of Myotonic Dystrophy Patients in Japan” (2016) 17 BMC Medical Ethics
Chalmers D, Nicol D, Kaye J, Bell J, Campbell A, Ho C, Kato K, Minari J, Ho C-H, Mitchell C, Molnár-Gábor F, Otlowski M, Thiel D, Fullerton S and Whitton T, “Has the Biobank Bubble Burst? Withstanding the Challenges for Sustainable Biobanking in the Digital Era” (2016) 17 BMC Medical Ethics 1
Bell J, Coathup V, Kaye J, Ancillotti M, Coy S, Rigter T, Tatrum T, Grewal J, Akcesme F, Causevic-Ramosevac A, Milovanovic G and Nobile M, “Challenges and Opportunities for ELSI Early Career Researchers”. [2016] BMC Medical Ethics
Mitchell C, Ploem M, Hennekam R and Kaye J, “A Duty To Warn Relatives in Clinical Genetics: Arguably ‘Fair Just and reasonable’ in English Law?” (2016) 32 Journal of Professional Negligence 120
Woolley J, McGowan M, Teare H, Coathup V, Fishman J, Settersten R, Sterckx S, Kaye J and Juengst E, “Citizen Science or Scientific Citizenship? Disentangling the Uses of Public Engagement Rhetoric in National Research Initiatives” (2016) 17 BMC medical ethics
Budin-Ljøsne I, Mascalzoni D, Soini S, Machado H, Kaye J, Bentzen H, Rial-Sebbag E, D’Abramo F, Witt M, Schamps G, Katić V and Krajnovic D, “Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?” (2016) 14 Biopreservation and Biobanking 241
Kaye J, Briceño Moraia L, Mitchell C, Bell J, Bovenberg J, Tassé A and Knoppers B, “Access Governance for Biobanks: The Case of the BioSHaRE-EU Cohorts” (2016) 14 Biopreservation and Biobanking 201
Nicol D, Bubela T, Chalmers D, Charbonneau J, Critchley C, Dickinson J, Fleming J, Hewitt A, Kaye J, Liddicoat J, McWhirter R, Otlowski M, Ries N, Skene L, Stewart C, Wagner J and Zeps N, “Precision Medicine: Drowning in a Regulatory Soup?” (2016) 3 Journal of Law and the Biosciences 281
Kaye J, Briceño Moraia L, Curren L, Bell J, Mitchell C, Soini S, Hoppe N, Øien M and Rial-Sebbag E, “Consent for Biobanking: The Legal Frameworks of Countries in the BioSHaRE-EU Project”. (2016) 14 Biopreservation and Biobanking 195
Spencer K, Sanders C, Whitley E, Lund D, Kaye J and Dixon W, “Patient Perspectives on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study” (2016) 18 Journal of medical Internet research e66
Kaye J, Bell J, Briceno L and Mitchell C, “Biobank Report: United Kingdom”. (2016) 44 The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 96
Frøen J, Myhre S, Frost M, Chou D, Mehl G, Say L, Cheng S, Fjeldheim I, Friberg I, French S, Jani J, Kaye J, Lewis J, Lunde A, Mørkrid K, Nankabirwa V, Nyanchoka L, Stone H, Venkateswaran M, Wojcieszek A, Temmerman M and Flenady V, “ERegistries: Electronic Registries for Maternal and Child Health”. [2016] BMC pregnancy and childbirth
Baker D, Kaye J and Terry S, “Governance Through Privacy, Fairness, and Respect for Individuals”. (2016) 4 EGEMS (Washington, DC) 1207
Webborn N, Williams A, McNamee M, Bouchard C, Pitsiladis Y, Ahmetov I, Ashley E, Byrne N, Camporesi S, Collins M, Dijkstra P, Eynon N, Fuku N, Garton F, Hoppe N, Holm S, Kaye J, Klissouras V, Lucia A, Maase K, Moran C, North K, Pigozzi F and Wang G, “Direct-to-Consumer Genetic Testing for Predicting Sports Performance and Talent Identification: Consensus Statement”. (2015) 49 British journal of sports medicine 1486
Morrison M, Klein C, Clemann N, Collier D, Hardy J, Heisserer B, Cader M, Graf M and Kaye J, “StemBANCC: Governing Access to Material and Data in a Large Stem Cell Research Consortium”. (2015) 11 Stem cell reviews 681
Teare H, Morrison M, Whitley E and Kaye J, “Towards ’Engagement 2.0’: Insights from a Study of Dynamic Consent With Biobank Participants” (2015) 1 Digital Health 1
Chalmers D, Burgess M, Edwards K, Kaye J, Meslin E and Nicol D, “Marking Shifts in Human Research Ethics in the Development of Biobanking” (2015) 8 PUBLIC HEALTH ETHICS 63
Kaye J, Whitley E, Lund D, Morrison M, Teare H and Melham K, “Dynamic Consent: A Patient Interface for Twenty-First Century Research Networks”. (2015) 23 European journal of human genetics : EJHG 141
Williams H, Spencer K, Sanders C, Lund D, Whitley E, Kaye J and Dixon W, “Dynamic Consent: A Possible Solution to Improve Patient Confidence and Trust in How Electronic Patient Records Are Used in Medical Research”. (2015) 3 JMIR medical informatics e3
Kaye J, Muddyman D, Smee C, Kennedy K, Bell J and UK10K, “’Pop-Up’ Governance: Developing Internal Governance Frameworks for Consortia: The Example of UK10K”. (2015) 11 Life sciences, society and policy 10
Kaye J, Hurles M, Griffin H, Grewal J, Bobrow M, Timpson N, Smee C, Bolton P, Durbin R, Dyke S, Fitzpatrick D, Kennedy K, Kent A, Muddyman D, Muntoni F, Raymond L, Semple R, Spector T and UK 10K, “Managing Clinically Significant Findings in Research: The UK10K Example”. (2014) 22 European journal of human genetics : EJHG 1100
Kosseim P, Dove E, Baggaley C, Meslin E, Cate F, Kaye J, Harris J and Knoppers B, “Building a Data Sharing Model for Global Genomic Research”. (2014) 15 Genome biology 430
Mitchell C, Moraia L and Kaye J, “Restore Public Trust in care.Data Project” (2014) 508 NATURE 458
Mitchell C, Moraia L and Kaye J, “Health Database: Restore Public Trust in care.Data Project”. (2014) 508 Nature 458
Caulfield T, Burningham S, Joly Y, Master Z, Shabani M, Borry P, Becker A, Burgess M, Calder K, Critchley C, Edwards K, Fullerton S, Gottweis H, Hyde-Lay R, Illes J, Isasi R, Kato K, Kaye J, Knoppers B, Lynch J, McGuire A, Meslin E, Nicol D, O’Doherty K, Ogbogu U, Otlowski M, Pullman D, Ries N, Scott C, Sears M, Wallace H and Zawati M, “A Review of the Key Issues Associated With the Commercialization of Biobanks”. (2014) 1 Journal of law and the biosciences 94
Moraia L and Kaye J, “Spies, Data and Research”. (2014) 15 EMBO reports 200
Dixon W, Spencer K, Williams H, Sanders C, Lund D, Whitley E and Kaye J, “A Dynamic Model of Patient Consent to Sharing of Medical Record Data”. (2014) 348 BMJ (Clinical research ed.) g1294
Kaye J, Hurles M, Griffin H, Grewal J, Bobrow M, Timpson N, Smee C, Bolton P, Durbin R, Dyke S, Fitzpatrick D, Kennedy K, Kent A, Muddyman D, Muntoni F, Raymond L, Semple R and Spector T, “Managing Clinically Significant Findings in Research: The UK10K Example” [2014] European Journal of Human Genetics
Minari J, Teare H, Mitchell C, Kaye J and Kato K, “The Emerging Need for Family-Centric Initiatives for Obtaining Consent in Personal Genome Research”. (2014) 6 Genome medicine 118
Kaye J and Hawkins N, “Data Sharing Policy Design for Consortia: Challenges for Sustainability”. (2014) 6 Genome medicine 4
Melham K, Moraia L, Mitchell C, Morrison M, Teare H and Kaye J, “The Evolution of Withdrawal: Negotiating Research Relationships in Biobanking”. (2014) 10 Life sciences, society and policy 16
Moraia L, Kaye J, Tasse A, Knoppers B, Mitchell C, Soini S, Hoppe N, Wallace S and Øien M, “A Comparative Analysis of the Requirements for the Use of Data in Biobanks Based in Finland, Germany, the Netherlands, Norway and the United Kingdom” (2014) 14 Medical Law International 187
Kaye J, Kanellopoulou N, Hawkins N, Gowans H, Curren L and Melham K, “Can I Access My Personal Genome? The Current Legal Position in the UK”. (2014) 22 Medical law review 64
Knoppers B, Chisholm R, Kaye J, Cox D, P3G International Steering Committee, Thorogood A, Burton P, Brookes A, Fortier I, Goodwin P, Harris J, Hveem K, Kent A, Little J, Riegman P, Ripatti S and Stolk R, “A P3G Generic Access Agreement for Population Genomic Studies”. (2013) 31 Nature biotechnology 384
Muddyman D, Smee C, Griffin H and Kaye J, “Implementing a Successful Data-Management Framework: The UK10K Managed Access Model”. (2013) 5 Genome medicine 100
Harris J, Burton P, Knoppers B, Lindpaintner K, Bledsoe M, Brookes A, Budin-Ljøsne I, Chisholm R, Cox D, Deschênes M, Fortier I, Hainaut P, Hewitt R, Kaye J, Litton J-E, Metspalu A, Ollier B, Palmer L, Palotie A, Pasterk M, Perola M, Riegman P, van Ommen G-J, Yuille M and Zatloukal K, “Toward a Roadmap in Global Biobanking for Health”. (2012) 20 European journal of human genetics : EJHG 1105
Budin-Ljøne I, Harris J, Kaye J, Knoppers B, Tassé A, Bravo E, Cambon-Thomsen A, Eriksson M, Kyvik K, Litton J, Perola M and Rial-Sebbag E, “ELSI Challenges and Strategies of National Biobank Infrastructures” (2012) 21 Norsk Epidemiologi 155
Borry P, van Hellemondt R, Sprumont D, Jales C, Rial-Sebbag E, Spranger T, Curren L, Kaye J, Nys H and Howard H, “Legislation on Direct-to-Consumer Genetic Testing in Seven European Countries”. (2012) 20 European journal of human genetics : EJHG 715
Kaye J, Meslin E, Knoppers B, Juengst E, Deschênes M, Cambon-Thomsen A, Chalmers D, De Vries J, Edwards K, Hoppe N, Kent A, Adebamowo C, Marshall P and Kato K, “Research Priorities. ELSI 2.0 for Genomics and Society”. (2012) 336 Science (New York, N.Y.) 673
Kaye J, Curren L, Anderson N, Edwards K, Fullerton S, Kanellopoulou N, Lund D, MacArthur D, Mascalzoni D, Shepherd J, Taylor P, Terry S and Winter S, “From Patients to Partners: Participant-Centric Initiatives in Biomedical Research”. (2012) 13 Nature reviews. Genetics 371
Kaye J, “The Tension Between Data Sharing and the Protection of Privacy in Genomics Research”. (2012) 13 Annual review of genomics and human genetics 415
Whitley E, Kanellopoulou N and Kaye J, “Consent and Research Governance in Biobanks: Evidence from Focus Groups With Medical Researchers”. (2012) 15 Public health genomics 232
Murtagh M, Thorisson G, Wallace S, Kaye J, Demir I, Fortier I, Harris J, Cox D, Deschênes M, Laflamme P, Ferretti V, Sheehan N, Hudson T, Cambon Thomsen A, Stolk R, Knoppers B, Brookes A and Burton P, “Navigating the Perfect [data] Storm” (2012) 21 Norsk Epidemiologi 203
Borry P, van Hellemondt R, Sprumont D, Jales C, Rial-Sebbag E, Spranger T, Curren L, Kaye J, Nys H and Howard H, “Legislation on Direct-to-Consumer Genetic Testing in Seven European Countries” [2012] European Journal of Human Genetics
Kaye J, Curren L, Anderson N, Edwards K, Fullerton S, Kanellopoulou N, Lund D, MacArthur D, Mascalzoni D, Shepherd J, Taylor P, Terry S and Winter S, “From Patients to Partners: Participant-Centric Initiatives in Biomedical Research” [2012] Nature Reviews Genetics
Harris J, Burton P, Knoppers B, Lindpaintner K, Bledsoe M, Brookes A, Budin-Ljøsne I, Chisholm R, Cox D, Deschênes M, Fortier I, Hainaut P, Hewitt R, Kaye J, Litton J-E, Metspalu A, Ollier B, Palmer L, Palotie A, Pasterk M, Perola M, Riegman P, van Ommen G-J, Yuille M and Zatloukal K, “Toward a Roadmap in Global Biobanking for Health” [2012] European Journal of Human Genetics
Kaye J, “Embedding Biobanks As Tools for Personalised Medicine” (2012) 21 Norsk Epidemiologi 169
Boddington P, Curren L, Kaye J, Kanellopoulou N, Melham K, Gowans H and Hawkins N, “Consent Forms in Genomics: The Difference Between Law and Practice”. (2011) 18 European journal of health law 491
Kaye J, “From Single Biobanks to International Networks: Developing E-Governance”. (2011) 130 Human genetics 377
Knoppers B, Harris J, Burton P, Murtagh M, Cox D, Deschênes M, Fortier I, Hudson T, Kaye J and Lindpaintner K, “From Genomic Databases to Translation: A Call to Action”. (2011) 37 Journal of medical ethics 515
O’Doherty K, Burgess M, Edwards K, Gallagher R, Hawkins A, Kaye J, McCaffrey V and Winickoff D, “From Consent to Institutions: Designing Adaptive Governance for Genomic Biobanks”. (2011) 73 Social science & medicine (1982) 367
Knoppers B, Harris J, Tassé A, Budin-Ljøsne I, Kaye J, Deschênes M and Zawati M, “Towards a Data Sharing Code of Conduct for International Genomic Research”. (2011) 3 Genome medicine 46
Heeney C, Hawkins N, de Vries J, Boddington P and Kaye J, “Assessing the Privacy Risks of Data Sharing in Genomics”. (2011) 14 Public health genomics 17
O’Doherty K, Burgess M, Edwards K, Gallagher R, Hawkins A, Kaye J, McCaffrey V and Winickoff D, “From Consent to Institutions: Designing Adaptive Governance for Genomic Biobanks” [2011] Social Science and Medicine
Kaye J, “From Single Biobanks to International Networks: Developing E-Governance” [2011] Human Genetics 1
Curren L, Boddington P, Gowans H, Hawkins N, Kanellopoulou N, Kaye J and Melham K, “Identifiability, Genomics and U.K. Data Protection Law”. (2010) 17 European journal of health law 329
Curren L and Kaye J, “Revoking Consent: A ’blind spot’ in Data Protection Law?” (2010) 26 Computer Law and Security Review 273
Kaye J, Boddington P, de Vries J, Hawkins N and Melham K, “Ethical Implications of the Use of Whole Genome Methods in Medical Research”. (2010) 18 European journal of human genetics : EJHG 398
Church G, Heeney C, Hawkins N, de Vries J, Boddington P, Kaye J, Bobrow M and Weir B, “Public Access to Genome-Wide Data: Five Views on Balancing Research With Privacy and Protection”. (2009) 5 PLoS genetics
Hawkins N, de Vries J, Boddington P, Kaye J and Heeney C, “Planning for Translational Research in Genomics”. (2009) 1 Genome medicine 87
Toronto International Data Release Workshop Authors, Birney E, Hudson T, Green E, Gunter C, Eddy S, Rogers J, Harris J, Ehrlich S, Apweiler R, Austin C, Berglund L, Bobrow M, Bountra C, Brookes A, Cambon-Thomsen A, Carter N, Chisholm R, Contreras J, Cooke R, Crosby W, Dewar K, Durbin R, Dyke S, Ecker J, El Emam K, Feuk L, Gabriel S, Gallacher J, Gelbart W, Granell A, Guarner F, Hubbard T, Jackson S, Jennings J, Joly Y, Jones S, Kaye J, Kennedy K, Knoppers B, Kyrpides N, Lowrance W, Luo J, MacKay J, Martín-Rivera L, McCombie W, McPherson J, Miller L, Miller W, Moerman D, Mooser V, Morton C, Ostell J, Ouellette B, Parkhill J, Raina P, Rawlings C, Scherer S, Scherer S, Schofield P, Sensen C, Stodden V, Sussman M, Tanaka T, Thornton J, Tsunoda T, Valle D, Vuorio E, Walker N, Wallace S, Weinstock G, Whitman W, Worley K, Wu C, Wu J and Yu J, “Prepublication Data Sharing”. (2009) 461 Nature 168
Avard D, Bucci L, Burgess M, Kaye J, Heeney C, Farmer Y and Cambon-Thomsen A, “Public Health Genomics (PHG) and Public Participation: Points to Consider” (2009) 5 Journal of Public Deliberation
Kaye J, Heeney C, Hawkins N, de Vries J and Boddington P, “Data Sharing in Genomics--Re-Shaping Scientific Practice”. (2009) 10 Nature reviews. Genetics 331
Caulfield T and Kaye J, “Broad Consent in Biobanking: Reflections on Seemingly Insurmountable Dilemmas” (2009) 10 Medical Law International 85
Boddington P, Hawkins N, Heeney C, de Vries J and Kaye J, “The Path Forward for DNA Data”. (2008) 322 Science (New York, N.Y.) 1186
Kaye J, “The Regulation of Direct-to-Consumer Genetic Tests”. (2008) 17 Human molecular genetics R180
Zika E, Schulte In den Bäumen T, Kaye J, Brand A and Ibarreta D, “Sample, Data Use and Protection in Biobanking in Europe: Legal Issues”. (2008) 9 Pharmacogenomics 773
Caulfield T, McGuire A, Cho M, Buchanan J, Burgess M, Danilczyk U, Diaz C, Fryer-Edwards K, Green S, Hodosh M, Juengst E, Kaye J, Kedes L, Knoppers B, Lemmens T, Meslin E, Murphy J, Nussbaum R, Otlowski M, Pullman D, Ray P, Sugarman J and Timmons M, “Research Ethics Recommendations for Whole-Genome Research: Consensus Statement” (2008) 6 PLoS Biology ARTN e73
Kaye J and Gibbons S, “Mapping the Regulatory Space for Genetic Databases and Biobanks in England and Wales” (2008) 9 Medical Law International 111
Kaye J, “Testing Times: What Is the Legal Situation When an Adolescent Wants a Genetic Test?” (2007) 2 Clinical Ethics 176
Kaye J, Hawkins N and Taylor J, “Patents and Translational Research in Genomics”. (2007) 25 Nature biotechnology 739
Gibbons S, Kaye J, Smart A, Heeney C and Parker M, “Governing Genetic Databases: Challenges Facing Research Regulation and Practice” (2007) 34 JOURNAL OF LAW AND SOCIETY 163
Gibbons S and Kaye J, “GOVERNING GENETIC DATABASES: COLLECTION, STORAGE AND USE”. (2007) 18 King’s law journal : KLJ ukpmcpa1468
Lucassen A and Kaye J, “Genetic Testing Without Consent: The Implications of the New Human Tissue Act 2004”. (2006) 32 Journal of medical ethics 690
Kaye J, “Do We Need a Uniform Regulatory System for Biobanks across Europe?” (2006) 14 European journal of human genetics : EJHG 245
Gibbons S, Helgason H, Kaye J, Nõmper A and Wendel L, “Lessons from European Population Genetic Databases: Comparing the Law in Estonia, Iceland, Sweden and the United Kingdom”. (2005) 12 European journal of health law 103
Tutton R, Kaye J and Hoeyer K, “Governing UK Biobank: The Importance of Ensuring Public Trust”. (2004) 22 Trends in biotechnology 284
Kaye J, “Genetic Research on the UK Population--Do New Principles Need to Be Developed?” (2001) 7 Trends in molecular medicine 528
Kaye J, “Report May Lead to Population Collection by the Back Door”. (2001) 323 BMJ (Clinical research ed.) 632
Kaye J and Martin P, “Safeguards for Research Using Large Scale DNA Collections”. (2000) 321 BMJ (Clinical research ed.) 1146
Martin P and Kaye J, “The Use of Large Biological Sample Collections in Genetics Research: Issues for Public Policy” (2000) 19 NEW GENETICS AND SOCIETY 165
Prictor M, Teare H, Bell J, Taylor M and Kaye J, “Consent for Data Processing under the General Data Protection Regulation: Could ’dynamic consent’ Be a Useful Tool for Researchers?” Journal of Data Protection and Privacy
Kaye J, Gibbons S, Smart A, Parker M and Heeney C, Governing Biobanks (Hart Pub 2012)
Stranger M and Kaye J, Governing Biobanks: An Introduction (2012) 1
Kaye J and Stranger M, Principles and Practice in Biobank Governance (2012) 1
Stranger M and Kaye J, Governing Biobanks: An Introduction (2009) 1
Kaye J and Stranger M, Principles and Practice in Biobank Governance (2009) 1
Kaye J and Prictor M, “Dynamic Consent and Biobanking: A Means of Fostering Sustainability?”, GLOBAL GENES, LOCAL CONCERNS: LEGAL, ETHICAL, AND SCIENTIFIC CHALLENGES IN INTERNATIONAL BIOBANKING (2019)
Martin P and Kaye J, “The Use of Large Biological Sample Collections in Genetics Research: Issues for Public Policy”, Reconfiguring Nature (2004): Issues and Debates in the New Genetics (2018)
Kaye J, Bell J, Prictor M and Munsie M, “Trends and Challenges in Biobanking” in I Freckleton and K Petersen (eds.), Tensions and Traumas in Health Law (2017)
Kaye J, Parker M and Blair E, “Predictive Genetic Testing of Adolescents at Risk of Inherited Arrhythmic Death”, Disclosure Dilemmas: Ethics of Genetic Prognosis after the ’Right to Know/Not to Know’ Debate (2017)
Kaye J, “The Tension Between Data Sharing and the Protection of Privacy in Genomics Research”, ETHICS, LAW AND GOVERNANCE OF BIOBANKING: NATIONAL, EUROPEAN AND INTERNATIONAL APPROACHES (2015)
Hawkins N, Kanellopoulou N, Kaye J, Melham K, Boddington P, Curren L and Gowans H, “Ownership of Biomedical Information in Biobanks”, Comparative Issues in the Governance of Research Biobanks: Property, Privacy, Intellectual Property, and the Role of Technology (2012)
Kaye J, “Biobanking Networks – What Are the Governance Challenges?”, Principles and Practice in Biobank Governance (2012)
Kaye J, Dutton W and Piper T, “The Politics of Privacy, Confidentiality, and Ethics: Opening Research Methods: Data Sharing in Genomics-Is It Lawful?”, World Wide Research: Reshaping the Sciences and Humanities (2010)
Kaye J, “Biobanking Networks - What Are the Governance Challenges?”, Principles and Practice in Biobank Governance (2009)
Kaye J, “Regulating Human Genetic Databases in Europe”, ETHICS AND GOVERNANCE OF HUMAN GENETIC DATABASES: EUROPEAN PERSPECTIVES (2007)
Kaye J, “The Legal Jigsaw Governing Population Genetic Databases: Concluding Remarks on the ELSAGEN Legal Findings”, ETHICS AND GOVERNANCE OF HUMAN GENETIC DATABASES: EUROPEAN PERSPECTIVES (2007)
Kaye J, “Regulating Human Genetic Databases in Europe”, The Ethics and Governance of Human Genetic Databases: European Perspectives (2007)
Kaye J, “Abandoning Informed Consent: The Case of Genetic Research in Population Collections”, Genetic Databases: Socio-Ethical Issues in the Collection and Use of DNA (2004)
Johansson V, Mascalzoni D, Kaye J, Shah N, Jonsdottir G, Haraldsdottir E and Veldwijk J, “IDENTIFYING THE PUBLIC’S PREFERENCES FOR SHARING HEALTH DATA DIGITALLY”, VALUE IN HEALTH (2020)
Mascalzoni D, Bentzen H, Budin-Ljosne I, Bygrave L, Bell J, Dove E, Fuchsberger C, Hveem K, Mayrhofer M, Meraviglia V, O’Brien D, Pattaro C, Pramstaller P, Rakic V, Rossini A, Shabani M, Svantesson D, Tomasi M, Ursin L, Wjst M and Kaye J, “Are Requirements to Deposit Data in Research Repositories Compatible With the GDPR?”, EUROPEAN JOURNAL OF HUMAN GENETICS (2019)
Zhang L, Watts L, Turner A, Teare H, Barrett J, Wordsworth P, Kaye J, Javaid M and Pinedo-Villanueva R, “USING THE RUDY STUDY PLATFORM TO CAPTURE QUALITY OF LIFE OF ADULTS WITH RARE DISEASES OF THE BONE”, OSTEOPOROSIS INTERNATIONAL (2016)
Morrison M, Kaye J, Faulkner A, Li P, Webster A and Bartlett A, “Biomodifying Technologies Policy Briefing 3 ‘Trends in Customisation and Personalisation of Advanced therapies’” (2021)
Morrison M, Kaye J, Faulkner A, Li P, Webster A and Bartlett A, “Biomodifying Technologies Policy Briefing 2 ‘Accelerating Innovation: Speed and Timing in Translational research’” (2020)
Morrison M, Kaye J, Faulkner A, Li P, Webster A and Bartlett A, “Biomodifying Technologies Policy Briefing 1 ‘Making Good Targets for Translational research’” (2020)
Watts L, Zhang L, Turner A, Teare H, Gray D, Gray N, Popert R, Hogg J, Barrett J, Luqmani R, Wordsworth P, Kaye J and Javaid M, “The RUDY Study: A Novel Approach to Patient Driven Research in Rare Musculoskeletal Diseases” (2016) S325
Angers A, Bohacova A, Kaye J, Gardner R, Petrillo M, Querci M, Raffael B and Van Den Eede G, “Overview of EU National Legislation on Genomics” (Publications Office of the European Union 2018)